Me again! After some advice.

RD92

Felt the need to have a bit of a vent about this. Not sure if it’s ever happened to anyone else and I would be grateful if any advice!

So about 3 weeks ago I felt unwell and (sorry to be graphic) when going to the toilet I was passing out bright yellow liquid. Now being on methotrexate, I was immediately worried it was something to do with my liver! So I went to the doctors and for a blood test after about 3 or 4 days of passing this bright yellow liquid. I expected to hear from the hospital, as I have before when my liver function has been high. I didn’t hear anything and after a few days assumed I was fine taking my weekly methotrexate.

Fast forward 3 weeks, my knee is swollen and I had to ring rheumatology to see if they could drain it but I couldn’t get through and had to leave a voicemail. I then got a call back which I missed and received a voicemail saying they were returning my call and she was checking that I still wasn’t taking my methotrexate! To cut a long story short, my liver function was very high and nobody informed me. Since then I’ve taken 3 lots of methotrexate! Thinking I should complain but will it really make any odds or difference?! Arghhhh!

stickywicket

This would be very upsetting. I know rheumatology departments are very overstretched and GPs too but, if there's a problem with your bloods, you should be told. How you would be told would depend on how your hospital / GP deal with such things. My blood tests are always done at my GP's surgery, they send them to the hospital for analysis and then, if there's a problem, the GP rings me up. Some people have their blood tests at their local hospital and I don't know who would then be responsible for letting you know of a problem.

I think bright yellow urine is not necessarily anything to do with the methotrexate or your liver (It could simply be that you're not drinking enough water) but you should clearly have been told of the raised ALT levels.

For your own peace of mind you need to get to the bottom of this either through your rheumatology helpline or through your GP. And also find out where you go from here. Back on the meth? Or on something else? (If you try sulfasalazine you'll have bright orange urine :roll: )

Your diagnosis is difficult and I don't think your rheumatologist can come to a more specific one without some more clues. But you and your rheumatology team should be liaising closely re the blood tests. Has your liver been affected before? Have you been advised to steer well clear of alcohol?

Oh, and one other thing – there isn't necessarily much connection between pain experienced and inflammation levels ie the meds can sometimes be doing their job of dampening down the disease while we still feel a lot of pain. It's a nasty, sneaky disease.

RD92

stickywicket wrote:

It’s always the hospital for me. I went to the doctors to try and find out about my bloods and they told me they couldn’t as they always go back to the person that requests them to be done. Just wasn’t sure if it was rheumatology or whether somebody else in the hospital is supposed to be in charge of it.

It wasn’t urine it was the other! That’s why I was worried and went to have my bloods done as it was very unusual and wasn’t a stomach bug. I think I will speak to them next time about it as you say, for my own piece of mind. But I’m always mindful of how I speak to people as usually the person that deals with it, it isn’t their fault. They’ve told me now to stay off it for 2 weeks and then have another blood test. Hopefully my next appointment in July I will be able to sort a few things out.

I’ve had a few times where they’ve rang me about my liver function being high but it’s always generally when I’ve been unwell (I work in a primary school so it’s a regular occurrence) I tend to never drink anymore anyway. I’d rather eat my calories than drink them! 😂

Feeling a lot more positive after a few posts on here anyway and everyone’s advice! So thank you.

stickywicket

RD92 wrote:

stickywicket wrote:

But I’m always mindful of how I speak to people as usually the person that deals with it, it isn’t their fault.

That's so true. I always feel sorry for the poor receptionist etc who carries the flak for others' mistakes.

As for the yellow poo - yes, I think that is usually connected with the liver and just as well you didn't ignore it. Sometimes these things resolve themselves after a few weeks of the meds: sometimes a different med is required.

It will be hard staying away from germs if you're with young children all day. At least the summer holidays will be here soon. Do you get your free flu jab every October?